A parent-led initiative offers support to new families dealing with cancer diagnoses.
When 3-year-old Kayden McLin celebrated the end of chemotherapy at St. Jude Children’s Research Hospital last year, his parents breathed a collective sigh of relief: “No more chemo! Let’s resume our lives,” they thought.
But to their horror, the next set of scans indicated a recurrence of the kidney cancer called Wilms tumor.
With shaking hands, Shanda McLin immediately paged Rebekah Grant, a mentor assigned to the McLin family through the hospital’s PAIR Mentor program. As a fellow St. Jude mom, Rebekah understands the roller coaster of emotions that occur during cancer treatment.
“Rebekah was the person to calm me down when I was falling to pieces,” Shanda says. “She walked my husband and me through that horrible time.”
Rebekah is one of a cadre of highly trained St. Jude parents who volunteer to help new arrivals tread the unfamiliar landscape of a cancer diagnosis. Through the PAIR Mentor program, these volunteers offer a lifeline to families as they embark on a journey that can be scary, confusing and tumultuous.
The mentors say they derive a sense of fulfillment by partnering with the new arrivals.
“I feel like this is my way to give back,” says Rebekah, whose son, Sam, underwent treatment for the eye cancer retinoblastoma several years ago. “It’s vital for the patient’s health, as well as for the parents’ mental and physical health, to know that they have a partner in this journey and that they’re not alone.”
Parents helping parents
The PAIR Mentor program was the brainchild of three St. Jude moms who benefited from having informal mentors when their children were undergoing treatment.
“Wouldn’t it be great if St. Jude had a formal mentoring program?” they asked.
The hospital’s Family Advisory Council championed the idea, supported by staff from across the institution. Parents, social workers, chaplains, physicians, nurse practitioners and other staff designed the program, created training materials, and recruited and trained parent mentors. The group also outlined a series of checks and balances to protect both mentor and mentee.
Mentors in the program avoid offering medical or psychological advice, according to Kathryn Berry Carter, director of Volunteer Services.
“They provide a good listening ear, support, and hope and encouragement to these new families,” she says.
If the family needs further support—from their chaplain, social worker or medical team, for instance—the mentor notes the issue on an encounter form that is completed after each session. Hospital staff can then address that need.
Meeting the need
Shanda says her mentor fulfills a role that cannot be filled by friends or hospital staff.
“My friends at home don’t have children with life-threatening diseases,” she says. “And although the doctors and nurses are wonderful, they haven’t been through this with their own children, so they can’t give the personal insights that another parent can offer. Rebekah has walked this path, so she’s a great resource.
“There have been times when I was really lost; I was at the end of my rope,” she continues. “Talking to her helped me to hang on.”
Abridged from Promise, Spring 2013